Is the ADOS ever wrong?

[give_me_a_latte]

My son had an eval beCause we truly thought he was on the spectrum. The intake therapist thought it was a high possibility, and suggested the ADOS. We saw a second therapist who administered the test and scored all the gazillion questionnaires and scales I filled out. His scores on the ADOS were below diagnostic limits, but everything else was pretty high for a spectrum disorder. His final diagnosis was anxiety. She said she gave him that diagnosis because of his scores on the ADOS being so low...and because he interacted different with me than with her (saying that a child on the spectrum would act the same way no matter who they were with). So her theory was that his autistic like behaviors were really due to his anxiety.

 

We had an intake last week with a play therapist, and she thinks we need to revisit the spectrum diagnosis. She says she'll get a better feel for things after she gets to know him, obviously. But she feels it's worth taking another look.

 

So my question.....has anyone heard of the ADOS missing a true spectrum diagnosis? The therapist who did the eval went on and on about how it's the gold standard and very sensitive. But to be honest, I was shocked and speechless that he wasn't diagnosed with a spectrum disorder. So how accurate is the ADOS?

[8filltheheart]

My son had an eval beCause we truly thought he was on the spectrum. The intake therapist thought it was a high possibility, and suggested the ADOS. We saw a second therapist who administered the test and scored all the gazillion questionnaires and scales I filled out. His scores on the ADOS were below diagnostic limits, but everything else was pretty high for a spectrum disorder. His final diagnosis was anxiety. She said she gave him that diagnosis because of his scores on the ADOS being so low...and because he interacted different with me than with her (saying that a child on the spectrum would act the same way no matter who they were with). So her theory was that his autistic like behaviors were really due to his anxiety.

 

We had an intake last week with a play therapist, and she thinks we need to revisit the spectrum diagnosis. She says she'll get a better feel for things after she gets to know him, obviously. But she feels it's worth taking another look.

 

So my question.....has anyone heard of the ADOS missing a true spectrum diagnosis? The therapist who did the eval went on and on about how it's the gold standard and very sensitive. But to be honest, I was shocked and speechless that he wasn't diagnosed with a spectrum disorder. So how accurate is the ADOS?

 

I don't know what the ADOS is. :confused: Our ds was diagnosed several yrs ago, so perhaps it is a newer diagnostic tool?

 

However, I do have a young adult child that has an official Aspergers diagnosis. His behavior is definitely different around different people, so that comment makes me wonder. Ds has also been an active participant in an adult Aspie group and all of them interact differently depending on who they are with. (just stand outside in the hall and watch what goes on in a room based on who is in there.)

 

I would seek another evaluation. (FWIW, if this is your first venture in to child mental health services, it probably won't be your only frustrating experience. We had drs throwing on labels w/o any testing! Drugs were cycled through like a drive thru pharmacy. If you have never felt the pressure to be an informed advocate before, you now official entrenched in the role.)

[dbmamaz]

having been through a bunch of evaluations (and also never heard of the ADOS), I'm more curious what you are looking for from an evaluation. My older son went through so many evaluations with so many different results. In the end, the label doesnt help. every autistic kid is different and needs something different. every anxious kid is different, every bipolar (one of my son's dx's) kid is different.

 

I have learned to simply respond to my children where they are. I dont look at what other kids are doing, I look at what THIS child is struggling with and how I can help. For my older son, he is on three meds, and i adjust school work and scheduling to what works best for him - fairly strict schedule, fairly straight-forward school work. for my younger son, i meet his needs - a looser schedule, very unstructured work, very limited writing. but as he gets more ready for writing, i bring it in.

[Murmer]

We had a similar situation with the ados dr said odd not asd. I don't know what will happen in the future for my dd but for now we are receiving help without the asd diagnosis.

[TippyCanoe]

.

[give_me_a_latte]

I'm not really "looking for" anything from an eval. I just want to gain a better picture of what's going on with my son. I spent so long thinking we were dealing with an Asperger's diagnosis, and I read all I could and tried to figure out what things may help. Then I was totally blindsided when the eval came back saying no. So then I started reading up on childhood anxiety and resources for that. His current therapist and I agree that it doesn't matter what it's called, or what the official diagnosis is. The important thing is to figure out what he needs and what will best help meet those needs. So I feel good about this therapist, like we're on the same page.

 

My main question here is about the ADOS, since the first therapist said its the "gold standard" for autism diagnosis. So I'm just wondering if it's really all that, or if others have had experiences with it missing a true spectrum diagnosis. I doubt we'll go through another round of testing regardless.

[rafiki]

.

[give_me_a_latte]

I read my earlier response and thought I kind of came across short. Not my intention! I'm typing on an iPad, which is infuriating, and my in-laws are here, and my son is running around like he mainlined 30 red bulls ;-)

 

We did the Stanford-Binet, Vineland-II, BASC-II, NICHQ Vanderbilt Assessment Scale, SPAS, ADOS, GADS, and SCQ. Everything was elevated (indicating probable presence of a spectrum disorder) except the ADOS.

 

But who knows. I just want to make sure that the professionals working with him see HIM and focus their work on the things HE needs. And I really do feel confident his current therapist will do that. I'm just not sure why so much weight was given to the ADOS unless it really is "that" good.

[Crimson Wife]

My youngest child had the ADOS administered 3 times within the space of 6 weeks with 3 conflicting results. The developmental pediatrician said she met the criteria for autism on both language and social interaction. The school district psychologist said she met it for language but not social interaction. The Regional Center psychologist said she met it for social interaction but not language. From my observations of the 3 administrations, I thought DD performed similarly all 3 times.

 

I'm rather dubious about the ADOS as a diagnostic test when the results vary so much from administrator to administrator despite a similar performance by the child.

[Terabith]

I've also always heard that the ADOS was the gold standard, and it actually was used to rule out a spectrum dx for my daughter. The rest of her evaluation looked strongly like Aspergers, but she didn't get a single "ding" on the ADOS. However, in our case, I never thought that she was on the spectrum but that a lot of her behaviors "looked" spectrumy. Her dx was also anxiety, and honestly, when we started her on medication, the difference was night and day. She was still herself, but she started interacting so much more with other kids. She got in trouble for talking at preschool. She really was like a different kid in some ways, but more herself, if that makes any sense. I was so reluctant to put a five yr old on meds, but it was the best decision we made.

 

That said, I find the comment that "a true spectrum child would behave the same way with everyone" to be nonsense. That makes me suspicious, and honestly, even gold standards can be wrong sometimes, I would think.

[Julie of KY]

Part of it is subjective and therefore subject to human error.

 

My son scored within the spectrum range on the ADOS, but they still didn't want to label him. They said, they didn't think that he's score like that on a different day, but I watched the test and his answers/reactions, etc were exactly him.

[brownie]

Of course your child acts differently with you! What child doesn't behave differently for mom?(for better or worse depending on the circumstances)

I do believe that a dr. who has seen many Asp patients can spend an hour with a child and just "know" whether it's Asp or not. Of course questionnaires are useful to some degree because everything doesn't show in the dr's office. But even I can now pinpoint Aspie behaviors when I see them. I have noted issue with friends' kids long before they ever realized anything was up. You become in tune with the signs so a dr who spends time with many different kids on the spectrum should be even more sensitive to it.

 

Also, different regions and different doctors vary in their inclination to give different diagnoses. For instance in some states PDD-NOS is very common whereas in others they are more inclined to go straight to Autism or Asp diagnoses. Sometimes it depends on the age (younger kids being more inclined to get PDD-NOS). States where services are more readily available I think are also more inclined to diagnose the milder cases.

 

Brownie

[Tokyomarie]

The ADOS is a well-known and highly respected instrument used in evaluating children who may be on the autistic spectrum. Initially created by Catherine Lord, PhD, who is a major autism researcher, and her colleagues, it has been around for over twenty years. A revision was released just this year. Like any instrument, its usefulness as a diagnostic tool is dependent on the examiner's experience in the field and with the instrument itself.

 

As with other neurodevelopmental disorders, autistic spectrum diagnoses should not be made or ruled out on the basis of one instrument alone.

[DawnL]

I think the Dr was mistaken in making a blanket statement, saying all kids with Aspergers treat every person the same. That's not true.

 

I had a frustrating time with the developmental pediatrician the diagnosed my son. He simply didn't listen to my long list of concerns and I was sure he was going to just dismiss us and not test.

 

He did the ADOS testing and quickly changed his tune. He said that he could see my son scored so high on the ADOS that he didn't even have to wait to score it and get back to me.

 

The Dr did go on to say that it bothered him that my son wasn't more "odd", though. Well my son is plenty odd. He just doesn't into trouble at school because he's homeschooled. (Which is why we chose to homeschool in the first place)

 

I am surprised the Dr that saw your child didn't consider a diagnosis of PDD-NOS.

[Renee in NC]

Everything can be wrong, even IQ tests. Trust me!:D

[Rsanders621]

Goodmorning, I know this is years later to your original post but I have to tell you, YES the ADOS can be wrong! A mother knows her child the best so follow your instinct. Please also remember that every child is very different, and no child with autism will present the same way. DO NOT let professionals tell you otherwise. Diagnoses shouldn't matter but as I'm sure you've found out insurance companies think they do. Services that your child needs are directly related to on paper diagnosis. I hope by now you've got a more clear picture for your child. Good luck and God bless.

 

AspieMom